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Abstract

This study aimed to use an individual approach in evaluating QoL in long-term survivors of Hodgkin's lymphoma (HL) and their view of what impact the disease has had on life using an extended version of the The Schedule for the Evaluation of the Individual quality of life-Direct Weighting (SEIQoL-DW). Adult long-term survivors from HL (n = 121) were compared with a randomly selected sample of the general population in Stockholm (n = 236). The results showed that the most commonly nominated areas (> 50% of patients and controls) important in life were family, personal health, work and relations to other people. The HL survivors mentioned leisure and finances less frequently than the controls. However, neither the current status in the different areas nor the QoL index score differed between survivors and controls. Thoughts and worries around disease, fatigue and loss of energy and late effects on skin and mucous membrane were the most commonly reported problems following HL. Sixty-six percent of the survivors reported a change in their view of life and of themselves. Demographic and disease characteristics did not influence the ratings of the chosen areas. In conclusion, long-term survivors of HL seem to have adapted well to the situation of having had a life-threatening disease and undergoing treatment, as measured with SEIQoL-DW. The extended Swedish version with a disease-specific module could be of great value when identifying specific issues that are important for the patient at time of evaluation.

The use, feasibility and psychometric properties of an individualised quality-of-life instrument: a systematic review of the SEIQoL-DW

“…Three papers presented results from an extended version including a disease-related part (SEIQoL-DR) assessing the domains most affected by disease and treatment at an individual level [40][41][42].…”

“…In line with this, some studies asked more specifically for the quality of each nominated domain: for example, ''… rate each domain between best possible and worst possible …'' [10,11,21,22,49,50]. Ten of the reports explicitly asked participants to rate the nominated domains regarding satisfaction [19,20,26,28,36,[39][40][41][42]53] and additionally four studies asked for rating of functioning and/or satisfaction [27,44,46,48].…”

“…One study permitted participants to nominate less than the recommended five areas if the participant had difficulties spontaneously coming up with five areas [40][41][42].…”

“…Diagnoses, prognoses and settings varied across studies. The most common diagnosis was cancer (n = 10) [15,19,20,24,30,31,[40][41][42]45] followed by neurological disorders (n = 8) [17,19,21,23,27,28,43,46].…”

“…The paper reporting the highest rate of missing data (83%) investigated frail older people living in nursing homes [29]. Five studies reported failure to nominate five domains [24,[40][41][42]45].…”